MSCIS Research Studies

 The University of Michigan is conducting a study called Developing a Patient-Centered Measure of Caregiver Relationships and is now conducting interviews with adults with SCI to learn about their experiences with caregivers.

This is a collaborative study, being conducted by Craig Hospital in Colorado, Kessler Rehabilitation in New Jersey and the University of Michigan to examine the effects of an intervention designed to increase SCI specific and general self-efficacy beliefs, enhance emotional wellbeing, increase resilience and improve participation in society for people with SCI. Participants are randomized into one of three groups: 1) a group that participates in six virtual training sessions (using Zoom for Health) and will also receive written and on-line resources; 2) a group that receives the written and on-line resources; and 3) a group that only conducts the study’s assessments. Including follow-up assessments, participation in the study takes about one year.  Nearly 190 people with SCI have already participated in this program across the three sites. At Michigan, these interventions have been conducted three times and the study is preparing to conduct it for a fourth time, hopefully in early spring of 2021. Our study coordinator is Adrienne Roth and she is currently recruiting.  If you are interested in learning more about this study, please contact Adrienne at reinventing.yourself@umich.edu or (734) 936-9474.

A U.S. ARMY/CDMRP/Department of SCIRP Sponsored Project

Project Principal Investigator: Denise G Tate, PhD

VA Site Principal Investigator: Lisa DiPonio, MD

Summary

Living with a spinal cord injury (SCI) requires extensive personal decision making to address the many associated health issues and complications. These decisions are particularly complex when involving issues of neurogenic bladder and bowel. This study was designed to examine factors influencing decision making around bladder and bowel for veterans and civilians with SCI, the process of decision making, and the impact of these decisions on health status, complications, and quality of life.

We conducted qualitative interviews with 61 participants and collected information on a series of standard assessment measures to best understand decision making related to bladder and bowel. We thank our collaborators and partners for their assistance with this project especially the Ann Arbor VA Health System, Michigan Paralyzed Veterans, the Ann Arbor Center for Independent Living, and the Paralyzed Veterans of America, in Washington DC.

This project is currently on its final phase. Publications related to the project are available including our first newsletter designed for people with SCI who experience these conditions. For those who participated in our study during the past years, thank you for your assistance.

To read more about factors influencing decision making click here (PDF file).

Summary

Quality of life data is essential when evaluating treatment outcomes from a patient’s perspective.  Having a way to compare quality of life data across people with SCI living in different parts of the world is important to guide disability policy while ensuring quality of services for those who need the most.

This study took place from 2017 to 2022 funded by a grant from the Craig H Neilsen Foundation in California. The purpose was to conduct a prospective international validation of the SCI-QoL BDS utilizing a large sample of over 500 people with spinal cord injury/disorders living in four countries: Australia, Brazil, Netherlands, and United States. Two SCI Model Systems in Colorado and Michigan were part of this study.

This group of investigators representing these various sites examined the qualities of this dataset to ensure it is a reliable and valid measure to assess quality of life. They found out that indeed this is a reliable and valid measure that is responsive to changes across time with some limitations, and that correlates well with secondary conditions as well as other clinical outcomes.

Resulting Publications

Several publications are now available from this project. These include:

• Post MW, Forchheimer MB, Charlifue S, Greve JMD, New PW, Tate DG. Reproducibility of the international spinal cord injury dataset: an international psychometric study. 2019 Spinal Cord 57 (11): 992-998. doi: 10.1038/s41393-019-0302-4.

• Rohn EJ, Hakbijl-van der Winds AJ, Post MW, Forchheimer MB, Charlifue S, New PW, Greve JMD, Tate DG. A cross-cultural mixed methods validation study of the spinal cord injury quality of life dataset (SCI QoL-BDS), 2022 Spinal Cord 60:177-186.

•  Post MW, Fellinghauer C, Charlifue S, New PW, Forchheimer MB, Tate DG. Rasch analysis of the international Quality of Life Basic Dataset Versions 1.0 and 2.0. Archives of Physical Medicine and Rehabilitation, 2022 Mar 18:S0003-9993(22)00276-3. doi: 10.1016/j.apmr.2022.02.018. Online ahead of print.

•  Post MW, Tate DG, Forchheimer MB, New P, Charlifue S, Greve J. Spinal Cord Injury – Functional Index/Capacity (SCI-FI/C): Responsiveness to Change over Time (submitted).

Resulting Presentations

Presentations made include:

• Poster presentation: International Society of Physical Medicine and Rehabilitation Annual Meeting (ISPMR) Towards a Common Measure of Quality of Life for SCI Clinical Trials. Tate DG, Post MW, Charlifue S, Forchheimer MB, Greve JM, New PW. 2017

• Poster presentation: International Spinal Cord Society (ISCoS) 56^th annual scientific meeting: Associations between Secondary Health Conditions and Quality of Life: Use of the International SCI QoLBasic Dataset (SCI-QoLBDS) in Clinical Practice. Tate DG, Post MW, Charlifue S, Forchheimer MB, Greve JM, New PW. October 2017.

• Poster Presentation: Post MW, Forchheimer MB, Charlifue S, New P, Greve JM, Tate DG. Reproducibility of the International Spinal Cord Injury Quality of Life Basic Dataset: An International Psychometric Study. Annual Scientific Meeting of the International Spinal Cord Society (ISCoS), November 2019.

• Oral Presentation: Coker J, Tate D, Post M, Charlifue S, Noonan V, New P, Greve J, Forchheimer M. Evaluation of a self-report method to obtain ASIA impairment scale score in people with traumatic SCI who reside in the community. Annual Scientific Meeting of the International Spinal Cord Society (ISCoS), November 2019.

• Oral Presentation: Coker J, Tate D, Post M, Charlifue S, Noonan V, New P, Greve J, Forchheimer M, Sevigny M. Evaluation of a self-report method to obtain ASIA impairment Scale in people with SCI who reside in the community. American Spinal Injury Association (ASIA) annual meeting (online) October 2020.

• Oral Presentation: Coker J, Mulcahey Award for Research in Outcomes Measurement for “Evaluation of a self-report method to obtain ASIA Impairment Scale in people with SCI who reside in the community. American Spinal Injury Association (ASIA)annual meeting (online). October 2020.

• Oral presentations and Instructional Course: Coker J, Tate D, Post M, Rohn E. Measuring quality of life after SCI: Key findings from a validation study of the International Spinal Cord Injury Quality of Life Basic Dataset (SCI-QoL BDS).  International Spinal Cord Society (ISCoS) annual scientific meeting (online) October 2021.

• Oral presentation: Tate et al. Validation of the Spinal Cord Injury Quality of Life Basic Dataset (SCI-QoL BDS). Quality of Life Taskforce meeting. International Spinal Cord Society Scientific Meeting. September 2022.